{I am blogging from Tilly’s laptop right now. While I love the iPad for surfing the internet, it is nearly impossible to type a full-length blog post on it. And I really can’t go back and edit (not sure why). I was hoping that with a real computer in front of me I would be coherent. But as I read this over, I realize I’m not. Sorry, it was a long night with too making wakings and too much pain.}
We are on day six in the hospital. After Apollo’s first double aortic arch division, we went home on day three! It did seem a bit early to us at the time, but wow, nobody is even talking releasing us right now.
Chuck left yesterday, and is now home with the other kids. I knew I would be staying in Texas longer than Chuck, but never dreamed we would still be in the hospital when he left.
Anyway, it’s nearly impossible to have virtually the same surgery done at two different hospitals without comparing the two. There are things I love about Seattle Children’s Hospital and things I love about Texas Children’s Hospital, but the experiences have been quite different.
My biggest complaint about Texas is that they are very reluctant to include the family in morning rounds. Seattle Children’s promotes itself as very “family friendly” and talks about always listening to the parents and including them in the “team”. This frustrated me for a while, basically because we got the run-around for the first eight months he was seeing doctors down there and it seemed like it was all talk. I felt that no one was listening or taking my concerns seriously enough. He was constantly seeing doctors and then we would be told to wait, wait, wait…we never felt like they were aggressive enough in trying to find out what was wrong. My son is in the hospital for his second heart surgery in 8 months. We were not making up his health issues, for Heaven’s sake! Each time he’s been admitted, however, we have felt like he’s gotten excellent care. In Seattle every morning as they do their rounds, they come and ask if you would like to be included. Chuck and I always said yes, and we’d have ten or so doctors, residents and students in Apollo’s room. We heard every word they said and could add our input or clarify things.
Here in Texas, rounds are done out in the hall, often without me even knowing they are happening. Not only do *I* not know what’s going on, but the doctors and students sometimes don’t even see him. I think this is bad for Apollo and bad for the doctors. Instead of being Apollo, a little boy, he’s a “28 month old male post-double aortic arch division.” Those are two very different things, in my opinion, when it comes to patient care. And I don’t like it. I feel completely out of the loop. When I ask questions (which I do) I am constantly trying to play catch-up.
We have been thrilled with the surgeon who did Apollo’s re-operation. I have no doubt we made the right decision in coming here. We saw Apollo’s first surgeon (in Seattle) three times. Once the day before his surgery, next the morning of his surgery when she marked which side she would operate on, and lastly, when she came out to tell us how the surgery went. Well, four times if you count the time I ran into her in the hallway on my way to grab some coffee.
Apollo’s surgeon here, checked on him about four times in the ICU.
In Seattle, Apollo’s pain was not under control. Chuck and I both determined that we would let them know that this time around. It was still a struggle this time, but he had his own pain management team, that checked on him throughout the day. Even though it was a struggle (his epidural didn’t work well) and took over five hours after we first saw him to give him some relief, they didn’t rest until they found the right combination of drugs. And they continue to check on him.
Current issues:
* Apollo is still draining too much chest fluid. He is now on diuretics to try to “dry him up”. He is on a non-fat diet (because the fat leaks into the lymphatic system). Oh the irony! He’s been on a high-fat diet since he was a year old. Too bad the few foods he eats (potato chips, french fries) contain fat. *sigh* He is currently eating almost nothing by mouth.
* Apollo is still not tolerating full feeds. He is being fed a high-calorie (non-fat) milk based formula every three hours (for an hour at a time) around the clock.
* Apollo still has not pooped. He is on stool softeners and had suppositories, but still no luck. Unfortunately, surgery and pain killers tend to do that.
Thank you for all of your prayers and comments. I have not had a chance to respond to them all but have enjoyed reading them.
so much information…i don’t know how you keep it straight! will keep him in my prayers.
for a food issues to be resolved, for him ot have a good BM, the drainage to stop and for his body to totally heal so you can go home.
praying for the other children too, i know they must really miss mom.
That’s weird about the rounds, I didn’t even know doing rounds without seeing the patient was even an option! Granted all our overnights have been in smaller hospitals (too small to do paediatric heart surgery, for sure) but the morning rounds have ALWAYS been done in the room. I can imagine how missing the rounds must frustrate things!
I haven’t commented much on your updates but I am always thinking of you guys. And, I check regularly for updates so thank you for keeping all of us up to date. I am glad you have Tilly with you especially now that your hubby has gone home. Continued prayers for all of you.
Just read your update. I would encourage you to talk to your nurse (or charge nurse, or nurse manager) about rounds. I know from working in their PICU that we were always encouraged to have the families be a part of rounds and we always valued their input. You have a right to be a part of them and if they know that you want to be, they may make more of an effort to find you before they start. This is definitely an area that I would be a little forceful with since it regards your plan of care. Praying that everything goes well and that he tolerates feeds and is discharged soon.
Praying for Apollo this morning, that he tolerates his feeds better and that his pain in under control. Yes, surgery slows down the system, but oh, what a pain that can be! Literally! 😉 Praying for you as well! Today it would be great if someone would just show up at the perfect time and just be there with you! Sometimes a hand to hold or a ear to listen makes all the difference. May the Lord bless you with that person. Wish we lived closer!
I’ve been following your story but haven’t posted…praying that all the issues are quickly resolved and that you’re able to head home soon! I have a friend whose baby had heart surgery for Tetralogy of Fallot about a year ago, and he had the same issue with the fluid. The had to feed him the low fat formula through an NG tube for a few weeks post surgery, and he went home with the tube. But, it was resolved completely within a month. Hang in there, Apollo and your family are in my prayers– that his recovery will be complete and that this will make an amazing difference in his life!
I would hate having to fight to be included in rounds! That stinks. Well keep fighting mama. You are the one that knows Apollo best. And you are the one that is with him 24/7. It boggles my mind why the team would not want your input.